In Their Own Words – It’s For Me

This ‘In Their Own Words’ author is Jess, who can be found at Diary of a Mom. There she writes about life with her husband Luau* and their beautiful daughters – nine and-a-half year-old Katie*, an utterly fabulous typically a-typical fourth grader, and seven and-a-half year-old, Brooke*, a loving, talented, hilarious second grader who has autism.

It had been a long, full, long day. Yeah, I know I said long twice.

We had walked (or in Mama’s case, more accurately hobbled) around the track at the Autism Walk. We – or at least the smaller half of the we - had jumped in the bouncy house until Mama finally had to send Miss N in on a retrieval mission. We’d played in the ball pit. We’d eaten pizza at ten a.m. We’d visited with Grammy and Grandpa DD. We’d gone out to lunch. We’d had a grand old time with Miss N and Yo, B! Hell, we’d even lost a tooth for good measure.

We – or the bigger of us at least - were ready for sleep.

We were lying on Brooke’s bed, snuggling together in the dark.

After a day spent immersed in capital ‘A’ Autism – as opposed to a day immersed in little ‘a’ autism which would simply be, well, ya know .. a day – I wondered what she’d taken in.

Did she hear the speaker at the Walk that called autism a ‘disease’? Though it causes much dis-ease in our world, it is actually a disorder.

Did she hear the young adult standing in front of us repeating over and over – and over – again, “Were at the Autism Walk. That’s for me. We’re at the Autism Walk. That’s for me.”?

Did she hear the mom explaining to her grumbling son that he needed to suck it up ‘because we are walking to help the sick kids’?

Did she see the bracelet that her big sister insisted on buying that said, “I love someone with autism”?

Does she remember me talking to her about it before? On other nights, snuggled in the dark, just like this.

Did the word sink in?

Did she connect it to herself? To us? To our family? To who we are?

Does it have any meaning for her at all?

Did she notice it that day? Over and over and over again?

“Hey, Brooke,” I asked into the darkness, trying to sound casual.

“Yes, Mom?” God, how I love that clipped little version of ‘Mom’ – somewhere between Mum and Mom – the word so wonderfully hers.

“Do you know that we go to the Autism Walk because you have autism?”

I was trying hard to sound cheerful – to keep the words light.

It is so desperately important to me that she not grow up internalizing our demonization of autism. Someday she will understand these words. She will know that it is a part of her. Then what? I can’t let her hate such a huge part of her life.

She didn’t answer. She was too busy fiddling with my hair.

I know better than to think that because she isn’t ‘paying attention’ she doesn’t hear me. She may process it three days, three months or three years from now, but I’ll be damned if she’s not taking it all in.

“Baby, do you know that you have autism?”

I’ve asked this question before. I’ll ask it again.

It’s so important to me that she hears it from us and doesn’t take her understanding of autism from a man at a podium shouting for its eradication. It’s far too easy for the lines to get muddled, for the leap to take her where I dread that she might go. Where does my autism end and I begin? If I have autism does that mean that I AM autism? If autism is evil then I must be too.

Add that internal monologue to the list of my greatest fears.

“Do you know what that means, Brooke – when Mama says that you have autism?”

“Nope.”

She answered. On some level, I was getting through.

I measured my words carefully. I knew I didn’t have the luxury of paragraphs. Our world demands that a sentence – maybe two – suffice.

“Well, autism is what makes some things hard for you, baby. But it’s also part of what makes you special and wonderful and well, Brooke.”

“Yup.”

“A lot of kids at the Walk today had autism too. There are LOTS of other children just like you who have it too.”

She has the right to a community. If I can help it, my girl will know she is not alone.

“So when I wake up, the tooth fairy will bring me Blue from Blue’s Clues just like my Periwinkle. And then I will have Blue. Blue will be just like my Periwinkle.”

I smiled at her, though she couldn’t see me.

“Right baby girl, I’m sure she will.”

She’ll be ready someday. In the meantime, we lay the foundation. We demystify the words. We own them. It’s a place to start.

I stole a kiss before her head disappeared under the covers. She popped back out with a giggle and threw her little arms around my neck as we went through the charade of choosing a number for the nightly countdown. In Prairie Dawn voice, we counted to thirteen. By odds. As always.

We’ve got a long time to wade through this stuff together. One sentence, one bedtime, one Walk at a time. We’ll get through it.

And wouldn’t you know it? In the morning, under her pillow, there was Blue.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

I have always wondered how to approach telling my son he has autism. He is 11 now and I know that I shouldn’t wait, but your story gave me hope that he will understand and realize that he isn’t a “bad person” for having autism. I may even do as you did and bring it up at the Walk we are doing in April. Thank you for writing this.

It has been almost a year since my now 3-year old son was diagnosed. A year full of adjustments and honestly, just trying to keep my head above the water. It never hit me until now, while reading your post, that someday I will have to try and explain all this to him. I was so mad for you, that you had to deal with the awfulness of hearing autism called a disease and autistic children being called sick kids. Then I realized that I will one day have to deal with this as well. It breaks my heart and just solidifies that this is going to be never-ending struggle. But at least I know that there are others and we are not alone.

You know, it is a long road with our kids and the challenges take on different forms as we walk together. But aspects of it do get easier as we find our footing. If you haven’t already, I hope you’ll read the following.

My 11 son entered middle school this year. He has an elective called social/personal skills in which the teacher opening talks about how you have autism and what this means and strategies to be successful. All the kids in the class have Aspergers. I knew I had to tell him that he was autistic before he heard it from school but dreaded that conversation more than anything. I kept remembering how the news was devastating to me and his Dad when we first found out and I felt like I would be “crushing his world”. Then I started thinking what if I waited to long and he feels angry and betrayed that I kept this secret from him. I wanted to tell him to sit down we need to have a talk – but my mom said this would probably make it bigger than it was and scare him since we do not usually do that type of conversation. I found a book written by a boy Reno Williams called “Reno’s World”(who actually attends his school) designed to provide awareness to neurotypical peers and siblings. We read that together and then I said you have autism just like he does. As a matter of fact everyone in your personal/social class has it – but everyone is still unique and different – not exactly the same. I told him that the reason that I hadn’t told him before now was that I wanted to make sure he was old enough to understand what it means to be autistic. I said that many people do not understand and they may think different things but that it is nothing to be ashamed of, it was not bad but that this was his information and it was up to him to decide if or when he might tell someone. He didn’t say much and went on about his way. I know he heard me and I think he understood but maybe he needed time to take it all in. I know we will have more conversations about it in the future but for now at least I set the stage for more to come.

My son with autism, now 19, overheard me speaking with a genetics professor about his autism research. When he heard the word “disease” he interjected himself quite emphatically and said, “Autism is a condition, not a disease.” Neither of us had referred to autism as a disease, but just hearing the words used in the same conversation provoked quite an interesting – and correct – response.

Thank you for sharing. You write beautifully. I’ve had many family members tell me not to tell my high functioning four year old he was ever diagnosed. Not to ‘label’ him. The longer time goes on that is just impossible as Autism becomes such a big part of our life. You’re right, they need to know they are not alone. Thank you SO much.

How great to read stories of other Mothers who have children with Autism. I have had some of those same conversations with my son Ralph James. I am always as honest as I can be with him, even though I know he might not understand it at the time I know he will when he is ready. I to have a very special child with Autism, and he brings me so much joy every single day. On the days when it is the hardest his smile always brings me through that day!!! We are so lucky to have him and there is not a day that goes by that I don’t appreciate him, and try to help him understand our world.
Thank you for your stories.

I have enjoyed reading your blogs. I have an grandson who is autistic, he is 7 yrs. old. We have a very special bond. I would truly love to understand him better. We talk everyday about trains and bulldozers and how much we love each other. I love him unconditional, the way all love should be.

I love what you wrote. It was spoken from the heart. What I am surprised by is the number of comments I have read where people have children who are almost teens that haven’t been told. I don’t know the severity of all the children’s autism disorders that are being spoke of in the comment thread but if your child is not severly autistic, I think the best time is when they are young(school age or younger). To me it is like everything with children, the younger you start something the better the outcome. My son knew by the time he was seven that he had Asperger’s, which was when he was diagnosed. (Previously he was a non-specified puzzle) I told him because I knew that his diagnosis would make his schooling, different, his life different etc. I felt he needed to know. I felt he needed to know so he could realize that he had Asperger’s, Asperger’s didn’t have him. He could live in sync with his disorder without his disorder taking over and causing havoc to his life. I guess, I don’t see too much of a reason to wait. Yes, there are people, places, society in general that are narrowminded and ignorant in their view and reactions to Autism but as long as your own family accepts you and loves you and doesn’t single you out, the diagnosis shouldn’t be the end of the world it just should be a part of their world and yours. :O)

As I sit here writing this my 12 yr old daughter with autism is hugging me and saying she loves me,demanding my att.I know we all want our angels to understand,alexandria(my angel) also has a trisomy3 translocation,monosomy6 ,sensory intergration and mr but her and I learn all we can together.One thing our angels know is we love them just the way they are.

I have a 3 1/2yr old girl who was recently diagnosed with Autism, she is also (currently) non-verbal. We just talk about Autism and being Autistic like it is just part of life. We try not to make it sound any more or less. Not sure if that’s the best thing, guess time will only tell. Our son is 7yrs old and one of the most (academically) gifted kids in his grade. I’m not just saying that because I’m a “proud momma” (although I am one of those with both kids), he really is. Anyway, when we brought our daughter home from the Pediatric Developmental Behavioral Health Specialist who gave us the “official” diagnosis. He came up to me out of the blue and says “I have to talk to her A LOT, and try to play with her A LOT or she might get trapped on a land inside of her brain”. This was his way to wrap his head around what was going on with his sister.

I really enjoy these comments. My little girl is 9, diagnosed with Autism when she was 3. Angelia is my 5th child and only daughter. We are so blessed to have her. I learn more and more about Autism every day. We decided not to try and explain to her about Autism. She wouldn’t understand. We just let her be herself and continue to watch her develop into a more typical child.

i know what you mean it’s a hard subject to approch i have a 3 year grand dauther that has autism lucky we caught in time to seek help for her she goes to special school and is doing pretty good. it’s hard to explain to any child no matter what thier age all you can do is to let them that you LOVE them, and try the best you can to cope, try all you can to help. thank you for poating this, LOVE to all special children, and may GOD bless them all.

This is wonderfully written. I’m a few years away from this conversation, but I really want both my kids (one ASD, one typical) to be understanding of difference and proud of who they are. You’re clearly doing a great job!

I was just reading your blog when my 11 year old son (PDD-NOS), Nick walked into the room. I told him you were trying to explain to your daughter that she has autism. Nick said to me “Wow mom, I guess we have something in common”. I have been telling Nick he is autistic for several years now. I tell him that he is a very bright and smart boy but his brain is wired differently. He seems to be satisfied with that explaination for now. Nick is now kicking me off the computer and he told me to tell you that your daughter will be ok :) and to tell her to be herself.

This is what I needed to read today. I’ve been thinking about this; wondering how to approach it. My son needs to know it, accept it, embrace it even because that’s who he is, and it’s OKAY. I think, though, that I have to learn to embrace it so I can teach him not to “demonize” (I liked that description you used) it. I’m getting there, but some days, it’s just so hard to embrace.

My son is in 2nd grade and we walk for Autism every year. He read over my shoulder as I was reading your words. I asked him do you know what autism is? He asked if he could type his answers out on this page. Here is his definition: Autism is just a way of thinking & processing information in your head. Autism is also what always makes me really special & smart about myself. It’s also what makes you you and I am proud of myself.

Just reading this blog gives me hope and courage towards my son’s future. He has autism and I have been dreading(wondering)how do I explain his differences to him. We went to the autism walk last year and we heard alot of ignorant comments and some nice ones. Back to the point I have always tried to show the “man in my life” that I love him. But HOW DO I SAY BABY YOU ARE SPECIAL AND YOU HAVE A DISORDER CALLED AUTISM THAT MAKES YOU DIFFERENT? I am still working on it but you did just give some motivation to really prepare myself for the talk that has to come. Thank you